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StellasMum

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About StellasMum

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  1. Hi Sarojane, It's so hard isn't it? I don't know where you are, UK or US, but having a good PANDAS Doc would be the decider for me. I thought that having antibiotics would be enough to get my daughter though this but, looking at ther now, I was wrong. You need proper medical supervision and help. I personally feel the tonsils were a barrier and I should have ignored all 'normal' advice and kept them.
  2. Hi all. To update, I went to see the paediatrician and after the great advice above, said I agreed to give Stella whichever antibiotic he advised. His behaviour was quite odd and he seemed to be worried he could be implicated if anything went amiss (!) with heart problems etc. He had a nurse in the room as a witness, then he gave me a book and told ME to read all the affects/side affects of the various antibiotics my daughter could take and made ME choose! After pointing out to him that Azithromicin was noted in his book a not being effective against strep, he wrote a presc for erythromicin (
  3. I'm starting to consider not taking the tonsils out at all actually and carrying on as we are, getting a course of antibiotics when they're infected. It won't stop her missing school and other things and she won't be happy but I don't have the support I need to really treat this as a PANDAS tonsilectomy so I feel a litle stuck.
  4. I should say we are in the UK, my 11yr old dd has not been diagnosed PANDAS but has been diagnosed with TS. Has many throat infections, had scarlet fever as a small child and many of the usual PANDAS symptoms. She gets into terrible rages and has sudden increases in tics, thats when I know her throat is bad again without even looking. I take her to the DR and as soon as she's on antiobics, it all improves. She is due to have her tonsils removed at the end of July because of repeated tonsilitus and missing school. I have asked for antibiotics before and after surgery but she can't have he
  5. Hi all, Am back again as we have just got a date for Stella to have her tonsils out, 31st July, so very little notice! Our pediatrician previously said he'd 'discuss' use of antibiotics for ten days before and after surgery, once we got a date for he op, so I'm in the process of geting this sorted. Will try to push for a longer course if possible but even getting ten days each way isn't easy. My concern again now is getting antibiotics in the future if Stella has symptoms but no infected or enlarged tonsils to show the Dr. Having never had a PANDAS diagnosis, it's tricky. I
  6. Hi again, sorry haven't been on here for a while! Saw Stella's (useless) paediatrician for check up appointment last week. He was the one who referred us to Great Ormond St Hospital after two years of nothing. He specialises in diabetes so no real help to me. I'd emailed him prior to the appointment explaining I need someone to authorise antibiotics at the time of tonsilectomy. He said he hadn't got my email and she should be treated as 'normal'. When I tried to talk he shut me down completely. He seemed to have an agenda from the start of the meeting and wouldn't change it. He was re
  7. Thanks for that bigmighty. Will possibly email her doc at Great Ormond St and also Dr Martino to see if anyone willl back up the use of antibiotics with her tonsilectomy. Got a letter from the hospital today to make an appointment asap, feels like they now want to rush ahead with removal and I'm kind of stalling...It's quite wearing when I'm the only person who thinks there's a PANDAS link. This amount of tonsilitus along with the tics can't be a coincidence though surely? Am torn between pushing for help or going along with everyone else, who think this is all in my mind! Am pretty much
  8. Thank you for the link, it's a really interesting procedure. However, being in the UK, anything we have done would need to be approved and I don't imagine I would receive support in going to Germany and getting this treatment for my daughter which is a huge shame. Thanks anyway. I'll certainly read up on the procedure a bit more.
  9. Hello all. Haven't been on here for a long time but in need of some help. Sorry if this has been done to death but need advice re any Drs in the UK who actually believe in PANDAS. Basic history; My dd is 10 and diagnosed with 'mild' TS. She started ticcing at age 7 and also suffered terrible OCD as well as echolalia, anxiety. and rages. She has a history of regular tonsilitus, had scarlet fever when young, was given penicillin which she couldn't keep down and was catatonic with infections though rarely had a fever. She now takes Erythromicin for infections as she was allergic to the penic
  10. Hi Lydiasmum and missmom, thanks so much for your replys. Lydiasmum, I totally agree that Stella would be better on continous abx but no chance of that at the moment. On the bright side, the GP was much more helpful yesterday than I expected and gave us another weeks worth of Erythromicin which I hope willl get this current bout under some control. It took some doing to get that and I went armed with PANDAS info expecting to be laughed out the room but he said he had heard of it though was clearly no expert. The one symptom Stella doesn't have is the frequent urination which has alway
  11. Please excuse spelling mistakes above. I am completely knackered from lack of sleep (having imaginary conversations with Doctor!!)
  12. Hi everyone. My ten year old daughter is diagnosed with TS though I believe she has PANDAS. At the moment she is on her third course of antibiotics for throat infection since March (she is allergic to penicillin so has erythromicin). As soon as she finishes the course, ten days later the infection is back. After a week of her waking up screaming at night, having horrible thoughts and images in her head and difficult behaviour in the daytime, I could smell the infection on her breath and went to the doctors but he said he would not prescribe as the tonsils didn't look 'bad enough'. Ove
  13. So sorry Wombat, I haven't got anything to offer really. I must admit I find a lot of the PANDAS stuff is so involved it does my head in too! Maybe you need to do some more digging and just explain the bits that jumped out at you and seemed to match your own experiences. Whilst my dd was on antibiotics last week she made such an incredibly fast improvement, there must be something in it. She seems to be going downhill a bit after finishing the course-multiple tics today-so I feel she needed a longer course possibly. Fat chance of more antibiotics from MY dr. What to do? Sorry I can't be
  14. Thanks again! The page I printed out was reasonably basic-I highlighted the parts in the 'diagnostic criteria' section that related to my dd-she had scarlet fever which is on the list.xx http://www.adhd.com.au/PANDAS.htm
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